1 - SPECIFIC
CHARACTERISTICS OF EARLY ONSET DEMENTIA
- Some research
suggests that people with early onset dementia decline at a faster rate.
- 1 in 10 cases
of dementia in younger people may be treatable (proper diagnosis is essential
but often not available).
- Patients
may need genetic counselling and support. (Genetic defects on chromosomes
1, 14 and 21 are responsible for early onset dementia in a small number
of families.)
2 - SPECIFIC
CHARACTERISTICS OF YOUNGER AD SUFERERS
- They tend
to react differently to the disease.
- They tend
to be more physically fit and active.
- They tend
to have more responsibilities in terms of employment and families (decisions
made due to their work and social roles can have considerable effects on
others).
- They may
be more aware that something is wrong because they have higher expectations
of their abilities and capacities.
- They may
be more inclined to feel powerless and frustrated.
3 - WHAT
EXTRA PROBLEMS AND NEEDS DO YOUNGER SUFERERS HAVE?
- Family
and friends
- If sufferers
have a dependent family, they need to make arrangements for the future.
- Younger sufferers
are more likely to have younger children and their children may feel that
they are responsible for the disease due to something they have thought,
said or done.
- Young children
lose the support of at least one parent. Some children can start to experience
difficulties at school and may behave in an aggressive way to the parent
who is ill or become a kind of "carer of the carer".
- Early onset
dementia can disrupt family transitional stages. For example, the youngest
child may find it difficult to leave home, thereby preventing the family
from moving on to the next stage.
- Parents of
younger Alzheimer's disease sufferers may be unwilling to accept the diagnosis.
- Friends and
relatives may fail to give their support due to their problem accepting
the diagnosis, shock and a feeling of helplessness.
- Personal
relationships
- Strain on
relationship for a number of reasons :
- lessening
sexual interest or increased sexual demands (which does not correspond
with the partner's needs)
- personality
change
- loss of job
may lead to a loss of social and financial status
- forced to
stay at home, even though still active and energetic (which can make additional
demands on the partner)
- Employment
and finances
- There is
an increased likelihood that the person is working and will have to change
or leave his/her job.
- Need to make
provisions to keep the person in employment for as long as possible.
- Those not
in paid employment - are they claiming all the benefits they are entitled
to?
- Importance
of an early diagnosis to avoid a person being dismissed because of ignorance
of the disease and then receiving a reduced pension and loss of benefits
as a result.
- When young
Alzheimer's disease sufferers have to retire or lose their job, carers
might also have to leave a job in order to care for them, thereby resulting
in a double loss of income.
- Diagnosis
- Aside from
the distinctive choreiform movements that are found in the stages of Huntington's
disease, the diagnosis of younger onset dementia, especially Alzheimer's
disease, Pick's disease and multi-infarct dementia, is medically very challenging.
This is partly due to the fact that diagnosis is based on exclusion and
there is a distinct lack of available research on the first signs of dementia.
- Many general
praticioners have very little experience of early onset dementia and may
even rule out the possibility. They might think that the problem is due
to the menopause, depression or migraine etc.
- The symptoms
may be confused with other disorders or even drug misuse.
- Younger Alzheimer's
disease sufferers do not fit easily into one medical speciality.
- An early
diagnosis is all the more important due to the fact that younger sufferers
may have more commitments. The sooner they know the diagnosis, the sooner
they can start to take an active role in making necessary arrangements
and planning their own care.
- Legal
and financial matters
- The problem
of joint accounts (the need to make arrangements such as an Enduring Power
of Attorney; otherwise the bank may freeze the account).
- Need to appoint
agents or appointees to handle the person's finances.
- Behaviour
- There is
an increased problem with young Alzheimer's disease sufferers with regard
to wandering and aggressive behaviour in that they are fitter and more
active. Consequently, their behaviour may be more difficult to handle.
- Younger Alzheimer's
disease sufferers are often unwilling to give up driving which is their
last sign of independence. Once dementia has been diagnosed though, insurance
companies may be unwilling to insure them.
- Lack of
awareness among the public of early onset dementia
- People may
be less likely to make allowances for strange behaviour than they would
for older people. This has on occasions led to young Alzheimer's disease
sufferers being arrested for petty crimes such as shoplifting.
- Insufficient
services for younger Alzheimer's disease sufferers
- Younger Alzheimer's
disease sufferers often have the problem of not fitting into a specific
category. It is sometimes a case of having to choose from amongst a range
of services, which may have been set up with other needs or age groups
in mind. In such cases, the services provided are unlikely to provide for
their specific needs (related to their age, their emotional reaction and
having dependent children or teenagers who may also be their carers).
- General pratitioners
may be unaware of the appropriate services to help the person and his/her
family.
Author
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Early-Onset
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